I was fortunate to attend the recent ISPS conference in New York. MIA already has another excellent post on this and I hope there will be more to follow. I suspect each of us will bring a somewhat different perspective based on our own experience and I hope the polyphony of voices will enrich the reporting of this event. There was so much happening – often simultaneously – that my only complaint is that there were many fine workshops that I was not able to attend. I want to extend my sincere thanks to the organizers of this meeting.
For some of my friends and acquaintances, I had the sense that the meeting was not so revelatory – after all many of them have been toiling in this arena for many years – and for many of us there is this nagging question about how many others will embrace what seems so evident and important. Yet for me the meeting was overall exciting and encouraging. There was such a rich array of ideas and programs with some remarkably courageous people trying to bring their ideas to life. Yet at times, I picked up the tension that is inevitable in a large group where there are shifting and evolving ideas. There is a temptation to focus on the differences. Perhaps out of a desire to preserve my own optimism or just as an attempt to understand and apply these models, I thought about the areas of commonality.
I began my meeting in an outstanding workshop with Larry Davidson, PhD a Professor at Yale and a well established researcher in the field of psychiatric recovery. Dr. Davidson’s work is based on years of talking to people who have experienced psychosis, asking them what helped them to recover. The title of the workshop speaks volumes: “Psychosis, Recovery, and Love.” This is in (very!) brief what I took away from his talks: In order to help people to recover, we need to make contact in a human way. People experiencing severe distress – what we call psychosis – want what the rest of us want, to have a life of meaning which in plain terms often translates into having friends, a place to live, a job. When we take on the role of helper we do not so much instruct as we listen carefully in a way that maximizes the person’s ability to figure how how he can define for himself what he wants in his life. Those of us in a helper role may need to at times be the one to hold on to that view of the person as someone capable of recovery even when the person is not so able to grasp it.
At the same time, I was spending the day with Dr. Davidson, there were workshops on Open Dialogue, CBT psychosis, psycho dynamic psychotherapy, compassion focused therapy and more. Through the week there were talks about the Hearing Voices network, recovery communities, Soteria, family homes, needs adapted treatments, and peer supports of various types. There were experts of all varieties – professionals (both researchers and clinicians), those with lived experience, and family members who bring their own particular and important lived experience. There were rich discussions during, in between and after the conference ended. I took something from each one of you who crossed my path and I thank you all deeply. While I was sitting in Dr. Davidson’s workshop. I imagined that similar themes were being discussed in other rooms – perhaps approaching it from a somewhat different vantage point or with a slightly different emphasis. Through the rest of the meeting, it felt as if I was hearing common themes, a melody that would replay in different contexts. This is my attempt to articulate what I thought I heard.
Positive regard – A few months ago, I attended a different conference on childhood trauma. The speaker talked about an essential thing that every child needs – the sense of positive regard from his caretaker. She showed a photo of a mother and baby gazing into each others eyes and smiling. She talked about the feedback loop – the mother looks at the baby, the baby looks back often squealing and wriggling in delight. Each look reinforces the other. When Dr. Davidson talked about love, he listed the many forms that love can take: respect, affection, service to others – these are forms of love that are important for all of us. One moving part of the meeting was when we watched a documentary about a young Norwegian woman who had spent years in a mental hospital. She heard horrible critical voices and she had tried many times to end her life. After about 7 years, she met a nurse who tried persistently to make contact. Eventually, the young girl let her in and over time she recovered. The young woman, Silje Marie Strandberg and her nurse, Lone Viste Fagerland spoke at the meeting. It appeared that Lone’s ability to see the young girl with affection, to reach out to her, to literally touch her, to hold her with positive regard even when Silje Marie could not see this in herself was healing. These same themes had been discussed by Dr. Davidson and developed in a research setting half a world a way.
Respect – Although this overlaps with positive regard (and there will be many overlaps to follow), I am trying here to capture the notion that each person has a value and a contribution. We want to respect each person’s perspective even if we do not understand or share it. Even when we are talking about difficult things, it is our obligation to find ways to talk about them with respect.
Non-hierarchical systems– This is inherent to peer programs and may be one of many reasons they are so important and valuable. It gets trickier with systems in which hierarchy is deeply embedded. But it can be held as an attitude and a value – as is done in the model of Open Dialogue. In my work – where I would be disingenuous to clients or co-workers to deny my power position – I can strive to hold as a goal that I remain humble about the limits of my knowledge and expertise.
Getting feedback and adjusting what one does based on this feedback– In the stories of the development of many programs, the ones I admire most are ones that are open to change based on feedback and experience. Asking people what was helpful and adjusting based on the answer is crucial. I worry about dogma. I worry about the historic tendency in our fields to blame the person when the treatment is not helpful rather than to look critically at our treatments and adjust. This is a challenge in a world that values manuals and consistency and it is a challenge for anyone who wants to brand his cherished approach, but I think it remains critical.
Acknowledging uncertainty/Not insisting on one explanation of the problem– This was emphasized in the introduction of the British Psychological Society report and was echoed in many sessions through the meeting. We do not understand the nature of these problems. We clearly do not have any particular brain dysfunction mapped out (and I suspect we never will) to explain psychosis but I would argue that trauma – while supported in a general sense by the evidence – remains a question to be explored on an individual level (meaning we do not presume trauma but wonder about it). We strive to give people the opportunity to think about the experience as something more than brain dysfunction, as something of meaning, to offer them some space to reflect on their experience. Holding onto uncertainty is perhaps another way to be open to adjustments in one’s approach and to resist the urge to blame the other when the outcome is not what we had hoped for. Acknowledging uncertainty is another way to remain humble.
Doing with and not to – This was discussed to in the other blog on this meeting.
Understanding that the narrative we (helpers) offer can impact outcome – How we talk about he problem impacts the outcome. When we tell a person that he has a brain disease, it can carry with it an implicit (even if unintended) message that he has limited agency or capacity to change. Yet this sense of agency is critical to recovery. We need to tread lightly and help to promote agency – and accept the risk that the person might make choices we do not like.
Carrying the hope– Sometimes individuals or families are not able to see a path to recovery. This is a time when expertise can be helpful. We can be the ones to carry the hope when the person does not have it. At the same time, we need to be careful t not to minimize the pain a person is experiencing. But there are ways to hold both the pain and the hope.
Accepting that recovery can be risky – We live in a world that wants to control and reduce risks. I certainly understand the urge. But it is a paradox. Control can be an illusion, a short-term balm for us that does not help the other. This is probably the most difficult and contentious element. Multiple people may view one situation and consider the risks in different ways. But we can at least acknowledge that control has its own costs that need to be considered when one is intervening in another person’s life.
These are just my thoughts as I try to integrate this all into my way of thinking. I have so many teachers. These ideas are derivative so if it seems I took it from you – please remember – I am not claiming any of this as my own. I mention Dr. Davidson but there were many, many others. I am very much the student here and I welcome hearing from you who want to elaborate or set me straight.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Thank you for this wonderful summary of a huge sprawling and diverse event! There were many views represented, and I believe that people (with lived experience and mental health professionals) are in different places on their journey of understanding and addressing the complex perceptual/emotional/physical/psychological/spiritual/social experience sometimes referred to as “psychosis”. I believe that holding onto uncertainty is key, it’s what allows and encourages one to learn from others’ experiences with an open mind, not just listening for what we want or expect to hear from others. Thanks for attending the conference and for sharing your experiences here.
–Jessica Arenella (full disclosure: ISPS-US President)
Your words mean a lot to me. I was nervous about this post. I wrote it as much for myself – to organize my thinking- as for anyone else. I did not want to speak for anyone or misrepresent this.
I had the pleasure and honor to talk with you there, and your summary of your experience at the conference matches mine as well. I found that my firm beliefs were validated and that also allowed me to flex some and loosen my grasp on my “certainty.” I have changed my relationship to the “unknown” and grown since participating in this full event. Participants like you, were gifts far beyond any one presenter. Thank you, Sandy, and also many thanks to the organizers and to all the diverse people who contributed to the stimulating event.
Thank you, Berta. Your words are beyond kind and generous. I am so glad we had some time to spend together.
So many people say, you can’t talk to the mad. Rubbish! I talked to `sick’ `psychotic’ people for years when I was a psych nurse. If you listened they would tell you what was going on and if you believed them, you could work together and it was a rewarding for me as I hope it was for them. As a 3rd year student nurse I worked in an ad hoc theatre program devised by a charge nurse who was a musician. With my years of experience as a professional actress we came up with a concert/panto/music theatre event. Everyone in that unit was diagnosed with schizophrenia. Everyone had had more than one episode, some going back to childhood. Everyone was between 16 & 24. Families got involved in sets and costumes, other staff, and even spouses helped with setting it up. We rehearsed, performed, and toured to other venues for 6 months. Nobody had a psychotic episode, nobody missed a rehearsal or performance, several showed extraordinary talent and even discharged people begged to continue in the show. We sang, laughed, talked, about everything – I was the director but I was one of the crew. I ditched the uniform because I didn’t need or want to be different or set apart. I met people who were seen as jetsam of society and respected them for their courage and strength, some I remember as some of the most impressive people I have ever met. The day the show was over for good, coming back from our last performance everyone became psychotic. I, as a student, long overdue for my next posting, was moved on. 2 months later I heard that my two most talented young guys, a 21 year young man & an 18 year old girl had suicided. It was devastating. I never heard of a similar program again, but my time with these kids made me well aware that psychosis is only another state of mind no more or less than any other. I took that to all the people I saw and knew for the rest of my time as a nurse councellor. That was 40 years ago, I hope I didn’t do too much harm, I hope having at least someone who saw the mad as just other people with different ways of thinking from me helped somehow. I don’t know. But I am totally against the mindless poisoning I see today, and experienced myself after a toxic, suicidal reaction to a small, short-lived experience with Prozac at age 57. For 13 years I was drugged, shocked, stigmatised and sidelined by people I and my team wouldn’t have let near ANY of my patients all those years ago. Two years ago I broke free and have now resumed my life, drug and `illness’ free. The brain damage that wrecked my career still impacts but I can work around a lot of it. Please pass on the message to those with different thoughts, that they are just and only that, different. There is a pace for all of us.
This is a powerful and moving story. Thank you for sharing it with us.
I also want to say that I have never met anyone whose `illness’ has no cause. It’s just a matter of finding it and recognising it for the trauma it was to the person, NOT to anyone else. Somebody once said, `it’s not what you gave that’s important, it’s what she/he took.’ Something that hurts me, may be meaningless to you, and if it was only one factor, it might have been for me too. I knew someone from a stable, well to do family, well educated. with everything in place for a `normal’ life. BUT:
a) She was artistic & very creative
b) intellectually gifted
c)emotional and acutely aware of other’s emotions
a) Her mother was a very reserved, cold and critical woman
b) The firstborn child, she was raised in the Truby King style of parenting at the time, strict discipline, minimal handling etc
c) Her mother was ill for most of a year during her 6th year
d)Due to her father’s job the family moved to 3 different counties, including one isolated community where there were few other children; and 4 schools before she was 9
e)Her parents were constantly fighting and threatening to divorce. As the eldest she was involved in the fights by both parents demanding she take sides, which continued throughout her adolescence.
f) At 13 she was sexually assaulted in a cinema by a total stranger. She had defied her mother by being there and was unable to either flee the man, or to later tell her parents.
g) She was unable to relate to boys, and rejected her mother’s suggestion that she act `dumb’ to attract them….
h) The family was socially isolated by her mother’s insistence that the local people, her school friends etc were inferior, so she never experienced entertaining as a normal part of everyday life.
As a young woman, though sexually active, she never enjoyed a regular, satisfactory relationship with any young men, was socially inept and while attracting female friends rarely initiated friendships. She was raped once by her employer in her mid-twenties, but stayed working in her job without mentioning it as the job was worth a lot to her. She eventually married a man she didn’t particularly like in order to have children. She later said that she felt that was the best she could expect and she could always divorce him when her children grew up.
This lady is vulnerable to depression certainly but, to date, she has lived most of her life successfully. She is in her 50s. She recently became moderately depressed and was told that her depression was endogenous, i.e. without cause. Apart from the 2 sexual assaults, her life appeared without `significant trauma’. ??? This scenario is seen in a lot of people with obvious and often very serious `mental illness’. Psychosis/depression et al are just other ways of trying to cope with events that no one knows about and/or don’t take seriously if they do. There is ALWAYS A CAUSE! Remember too, that maybe most mental `illness’ is grief, unresolved, unrecognised and unvalidated.